Thursday, September 19, 2013

My Mother's Medical Nightmare Part Two: Skilled care

I begin this part of the story with my mother's transfer to skilled nursing care. That particular horror is coming next and it comes with ups and downs and highs and lows, but first I realized I need to cover an important issue here.
I need to go back a little here and say there was never any doubt for me that Lisinopril caused this illness. What happened to my mother is consistent with every listed risk and side effect and she was badly failed by the doctor who prescribed it.
But what began to happen while she was in the hospital is that the doctors began to cast shadows at that obvious fact. She took the drug. She got sick. Logic, right? She wasn't sick before, she took a drug that made her sick. Oh... dear, how fast their leaps of logic, how twisted this story will become.
When they diagnosed this disease, Dermatomyositis, no one had ever connected it with the drug Lisinopril. Mainly the cause of this illness is CANCER. So, instead of looking further into the connection with the drug, the doctors began to look for cancer. My mother got cat scans, pet scans, hydoscans, poked, prodded, pestered in the desperate search for the BIG C. Except they couldn't exactly find it. No, that's not accurate, they couldn't find it at all. What they did find is two nodules in her lung that were "suspicious". They decided to presume they might be cancer. But they couldn't prove it because they couldn't biopsy it. To do so would collapse her lung. So they decided to "wait and see". Which makes me think they were never too serious about this because this wait and see took about six months.
So, my mom goes into skilled care and initially everything is great. The staff is really caring, there is wifi in the building and she has her own private room really near the nurses station. There is a phone and a television in the room. They get her a wheelchair and almost everyone is great.
On her second day, I talked to the physical therapists, the occupational therapists, the floor nurses. They are sunshine and happiness, they are all very positive. I like almost everyone. I stop in to see the speech therapist and sit down in her office. She says to me...
"I met your mother this morning and I assessed her. She is borderline dementia."
WAIT... WHAT????
I explain NO, no she does not. I tell this woman that my mother has a PhD, two Masters degrees, that she is fluent in seven languages and I would know if she had brain damage and she does not.
The woman flashed a vacant smile at me and told me my mother refused to answer her questions and so she wrote her down as having dementia.
Oh... I wanted to say all kinds of things... but I took a deep breath and I was NICE.
"You need to re-test her. My guess is that you insulted her and she shut you out. She has been through a lot but I assure you, I would know if she had dementia"
The woman gave me another simpering, condescending smile and shrugged, as if she was humoring me rather than just being wrong.
She grudgingly agreed to re-test my mother. If she had not, I would have really made a fuss and she could see that coming.
I marched into my mom's room.
"Mom, what did you do when that lady came in to ask you questions?"
My mother crossed her arms and looked away.
"Mom? What did you say to her?"
My mother met my eyes, finally.
"I told her to shut up and go away, that her questions were stupid and I was not answering them. For God's sake, she asked me to do math with apples! Am I in kindergarten?"
I calmly explained that this place was full of elderly people who had been through trauma and had different levels of cognitive abilities.
"I'm sorry, I screwed up. I'll answer her stupid questions."
"She's an idiot, Ma, she was completely condescending to me, but we have to work with her to get you well, so can you please answer her questions?"
My mother agreed.
Honestly, after being whacked out on fentanyl and morphine for five days, her brain was a little wonky but she was nowhere near demented, but it was the beginning of that speech therapist and her having a tenuous relationship. My mother put up with her and was nice but that woman is pretty bad at her job. I'll get to that later.
Mostly, things started going well, though. She was going to therapy every day and getting stronger and making great progress. The PT and OT people were fantastic and there were very few problems. UNTIL, one day we noticed that my mom's rash was back. That's a bad sign. We questioned it. They said it was a reaction to soap, or the lotion. She started itching. The rash got worse.
Finally, we started taking a look at her medications. For three weeks, she had been given the WRONG medication and NO ONE noticed. She had accidentally been given a heart medication that she didn't need. WTF! There was barely an apology and a pathetic explanation about how the pharmacy couldn't read the doctors handwriting and someone accidentally verified it... but no one asked US. That was the last thing she needed.
But we fixed it and kept a really close eye on it from that day on.
And pretty soon, they had her practicing walking with a walker. It was terrific! We were racing the clock, though. Medicare only gives you 100 days. They don't care how much rehab you need, that is all you get and the deadline was fast approaching and she wasn't there yet. She needed more time.
I started talking to them about getting her out of diapers and back on the toilet, which was key to her coming home. But for some reason, they just couldn't be bothered. And then my mother started to rebel like a teenager. I brought it up to her and she refused. Refused to try, refused to shower, refused to sit on the toilet or tell me what the problem was.
And my father was enabling her to do this. He did things for her that clearly she was capable of doing herself. He became a huge obstacle to her recovery.
My mother, who had written books, was refusing to read. What the hell was going on here?
Finally, our time ran out and we had to have the meeting.
We had two choices. Keep her there and go private pay and she could continue with therapy covered by Medicare part B or come home and get a private nurse and no therapy. We opted for the first option and told them that we needed her to have more time and become more independent.
She also had to move upstairs to the Alzheimer's Floor. This began a fresh nightmare...